It's no secret how much I have struggled with my diagnosis, but through all my difficulties I try to stay strong. I try to keep smiling.
My favourite part of the day is the first five seconds when I wake up. I've forgotten everything, and in those first five seconds I feel normal. I wish those five seconds could last for longer.. Even just for a day. But when those five seconds are up I remember. The reality comes crashing into me like a brutal wave knocking me off my feet. Then I have to face my day. Sometimes this is the hardest challenge for me; just getting up and out of bed. I really struggle with sleeping and wake up throughout the night meaning I always wake up feeling exhausted. Fatigue is part of my condition, so being able to sleep would make me feel so much better but I really struggle. My mind is constantly racing meaning my eyes fling open at any time and I am wide awake. I have been trying to work on my anxiety and stress with my therapist, but we still have a long way to go. Last week I had a doctors appointment to discuss how things had been going, so I told her about my sleeping issues. I love my doctor, she is so understanding and makes me feel totally at ease. She listened to all of my ramblings, and concluded that taking some sleeping tablets could help. She prescribed me Zopiclone tablets in the hope that a few nights good sleep would make me feel perkier and more positive so I left feeling good that I was going to try something to help. I took them that night hoping for a solid night sleep but was disappointed.. I woke up on Friday after a disturbed nights sleep. My mum said they could take a while to work so I shouldn't give up yet.
Friday day time I went to work as usual but didn't feel great at all. I felt poorly and like I needed to get in bed, but I put on my 'Positive Daisy' hat and ploughed on. I had to, because I was DJing at a friends 18th birthday party that night and I didn't want to miss out. Crohn's had already stopped me once before and it wasn't happening again. I wondered if it was me worrying about DJing that had made my symptoms worse as I know how bad stress and anxiety is for IBD. I tried my best to relax and someone who always puts my mind at rest is my dad. He is the King of Cool and always makes me feel relaxed and at ease. As I learnt how to DJ from my dad, I knew he would come with me to the gig and help me anyway he could. Knowing that I wouldn't be on my own made me feel much better and like I didn't have to worry so much. So I got home from work, got ready and headed out with dad to the party. Before I left I knew I felt bad.. I had a high temperature and felt shaky and ached all over which is just how I felt before I went into hospital. I tried to ignore how I felt in the hope it would go away. Once we got to the venue, I was focused on the job and distracted from how I was feeling. The party was going really well and I was enjoying myself. I felt like I was winning. I was getting back to myself and being me, but then I'd be reminded. I'd feel the urgent need to run to the toilet and it felt like Crohns had scored a goal against me. Luckily I had my dad there to cover for me while I could run to the loo. I wasn't backing down. I kept going, as many times as I had to keep running to the toilet, I didn't give up. But as the night went on, I felt worse. Cold but sweaty, cramps in my tummy, I felt faint, I felt dizzy, I felt terrible. I felt weak and defeated, but I was determined not to give up. I got my dad to cover for me whilst I sat down. I thought if I sat down for a minute the light headed feeling would go away. I thought I could regroup and go again, but as I stood up, my vision blurred and I hit the floor. I couldn't do it anymore. I had to give up and go home. My mum came to get me, as much as I didn't want to leave. It wasn't fair that I had to leave. Why was Crohns trying to ruin my life? Trying and succeeding! Always there pulling me back when I was doing my best to get on. It had won. It had got what it wanted. I was beaten. Defeated.
Saturday morning I woke up after another disturbed sleep. Despite taking pain meds and my sleeping tablet, I still woke up tired after a rough sleep. I felt slightly better than the previous night which was one positive. This evening I had plans to go to a charity ball with my boyfriend and family and there was no way I was not going. My mum said if I didn't feel up to it to stay at home, but there was no way I was letting Crohns win again. I spent the whole day in my pyjamas on the sofa reserving all my energy for the night. My mum, my boyfriend, my sister, my dad all kept saying to me I didn't have to go. But I did. They didn't understand. I couldn't let Crohns win. I couldn't have my life ruled by it and be told when I could and couldn't go out, and how I could live my life. I was going, and that was the end of it.
Typically, as the day went on I felt worse. I felt faint, and constantly felt like I was about to faint. I felt out of it and like I couldn't focus on anything or even stand up. But I wouldn't succumb to it. I'd keep going. It was time to get ready so I got myself in the bath. I thought it would make me feel better and ease my tummy pain, but I was struggling to even keep my head up. My sister came in and held me while she washed my hair. I knew she couldn't understand why I was putting myself through this and why I was forcing myself out, and I couldn't even explain, but I just knew I had to go out. Once out of the bath I laid on my bed for a while and tried to relax. But I was unable to sleep and was feeling anxious about getting ready and being late. My sister did me hair for me whilst I sat on the floor. I didn't even have the energy to lift up my hair dryer so I'm so lucky she did it all for me. I said I could do my make up myself, I didn't want to make her even later. I stayed sat on the floor doing my make up, then got up on my knees to go get something then SMACK. I fell face down onto my bedroom floor. I laid there for a while and started to cry. Silent tears spilled from my eyes and landed on the carpet. Why me? Why was this happening? Was I a bad person? Did I deserve this? Was I being punished for something unbeknownst to me?.. My sister came in and picked me up. She cuddled me close and let me cry into her. She said we didn't have to go, she'd stay in with me and we could watch films and chill out. But I did have to go. I just had to. I know it breaks her heart to see me like this, and it breaks mine to put her through it. She is such a strong person and without her beside me, I'd find all of this ten times harder. After a cuddle and her sorting me out, we got dressed and were ready to head out. Showtime. It was time to turn on my smile. Put on the fake face to hide the pain and tears. To pretend that I was 'fine'.
As we walked into the venue I felt wobbly on my feet. I had to be careful with each step I took as I felt like I could keel over at any second. But I had made it. That was the most important thing. I was out, I was here and Crohns hadn't won.
We had a lovely three course meal (I had a special one for me!) whilst there was a singer and raffle and auction going on. I was really having a good time and even decided to have a drink - my new tipple of vodka and water! I wondered whether it a wise decision to have alcohol given how I was feeling, but I was to the point now where I just thought f*ck it. I'd had enough and wanted to escape, and having alcohol gave me that feeling. I only had five drinks and for me that was plenty. I was drunk and I loved it. I danced all night, and even took my shoes off! (this is something I never do so I must have been properly 'merry'). Whilst I was dancing I closed my eyes. I was enjoying the feeling. Even if only for a night I had escaped. I was the one dictating, not Crohns. Even though I could still feel my tummy pains, the alcohol numbed it. I wasn't in the mood to worry. I was in the moment. I could worry about it in the morning.
A smile can hide a thousand tears
Sunday morning I woke up surprisingly hangover free! I think Vodka/waters are the way forward. It must be all the water I was drinking saving me from the hangover. And... I SLEPT THROUGH THE NIGHT!!! For the first time in I can't remember how long, I didn't wake up through the night! I was so happy I ran into my parents room like a kid on Christmas morning to tell them. Mum's response was to consider throwing out the tablets and just having vodka before bed! haha, only kidding. But I felt happy. I felt like a champion. Even if just for a day.
XOXO Crohnie Girl
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